Polycythemia Vera: Is there anything I can do for fatigue at home?

Posted by nicolekapr @nicolekapr, Mar 7 9:03am

Is there anything I can do for fatigue on a home basis? Diets, iron, anything? I’m low on ferritin, my count was 49.9% so they would not phlabotimize in office. Today I am so out of breath and out of it. So exhausted and I have school caregiving and mom duties! I would do anything today. Help!? Sigh. Longtime sufferer, newly diagnosed. 🙂

Hi @nicolekapr, welcome. Sorry to hear you've had a particularly difficult day with fatigue and being out of breath today. So hard to keep up with mom duties when you feel this way. You ask about lifestyle and home remedies that you can do to combat PV-related fatigue. Allow me to bring fellow PV members, like
@chadknudson @mwear @juiceinjc @richmpv @faithgirl30 @irishnanny3 @atir @apr931 @thlas1971 @sharonnz @trillium to share their tips and suggestions.

Nicole, you mention that you only recently were diagnosed with polycythemia vera, but you've been living with it for some time. What is your diagnosis tale? How did you finally get diagnosed?

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Hi @nicolek. I completely understand how debilitating fatigue is. For more than 10 years, fatigue was my chief complaint. I went from doctor to doctor for help. Mostly I was given antidepressants. I never seemed to be able to get someone to understand that if I was depressed, it was because of the fatigue, not that depression was causing fatigue. Interesting that my red blood counts were apparently through the roof all this time, but no one said a word about it. I had no energy to do anything. Even watching TV or reading was out because I was so exhausted. It got so bad that I had to give up my job last summer. It was causing strain on my marriage as well because he couldn't understand why I was tired all the time and was starting to take it personally.
I started seeing a hematologist (not Mayo clinic) in mid-January, who diagnosed polycythemia (cause as yet undermined, so I don't know if it's primary or secondary). I've had 4 phlebotomies since then–the last one cancelled because my hematocrit was in normal limits. (that's the only number my doctor watches)

I will say that after the phlebotomies my energy seems to increase for a day or two, but then it starts to cycle back down. Unfortunately, I haven't found a magic "fix" either. All I can say is for you to be as kind to yourself as you can. Do what you HAVE to do (I know being a mom doesn't allow you to crawl in bed) and let the rest go.

I do find it interesting that they wouldn't phlebotomize you due to your ferritin level. My doctor checked mine just twice–before and after the first phlebotomy–it was at 49 (before) and 40 (after) ng/mL. He's never checked it again. When I asked him why he stopped checking it, he told me it wasn't below 30 so he wasn't going to worry about it. I wonder if it's dropped more and that's contributing to my fatigue. hmmmm…. I do know my iron levels have been well within normal range, so I don't know if an iron-based diet/supplement would help. Of course I'm not a doctor, and I don't trust mine…

I do wish you the best. If nothing else, know that you aren't alone.

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Hi, @nicolekapr . @colleenyoung asked if maybe I had some helpful info on fatigue for you. I have an autoimmune disease, but not polycythemia Vera. Fatigue was my biggest problem and I’m slowly learning how to manage it. Let me ask a few questions first, if you don’t mind. You’re a mom so have child duty and at home school. How old are your children? What have you tried so far to get thru the day?

I have a couple of articles that might interest you:
http://Www.brainsupportnetwork.org
https://butyoudontlooksick.com
The suggestions might be a good start for you. Becky

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Hi there/ this is my second time posting for fatigue with a more clear idea of what’s going on. Admins, if you could direct me to where we tell our crazy medical stories I will share now! 🙂 waiting for BMB DX but looking like familial polycythemia. I have a Vera DX but got a second opinion. (It’s an odd case, new mutation). They are not committing yet. Will probably transfer to Mayo for the “more rare causes- the familial” or a thalassemia. Labs are all conflicting. One says yes, or no, BUT etc

After the birth of my daughter I got even worse, and that’s when they discovered the PV and RA, labs etc.

My question: is anyone getting prescribed a stimulant for their condition? One of my doctors said I’m not “anemic enough” for a transfusion, (red high, platelet stable, but the cells are very small. MCS MCHC MVC 24, low. I am taking a prescription for Phentermine for weight loss online and it has helped tremendously with fatigue. I’m sure this is not okay to do, but it’s the only thing in years that has touched the fatigue. Can you get a stimulant prescribed for your fatigue? I’ve heard mixed comments. I feel like a drugged asking. But they just always say drink water and wait for your labs.

Thank you all and gosh bless, and stay strong!

Nicole & fam

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@nicolekapr

Hi there/ this is my second time posting for fatigue with a more clear idea of what’s going on. Admins, if you could direct me to where we tell our crazy medical stories I will share now! 🙂 waiting for BMB DX but looking like familial polycythemia. I have a Vera DX but got a second opinion. (It’s an odd case, new mutation). They are not committing yet. Will probably transfer to Mayo for the “more rare causes- the familial” or a thalassemia. Labs are all conflicting. One says yes, or no, BUT etc

After the birth of my daughter I got even worse, and that’s when they discovered the PV and RA, labs etc.

My question: is anyone getting prescribed a stimulant for their condition? One of my doctors said I’m not “anemic enough” for a transfusion, (red high, platelet stable, but the cells are very small. MCS MCHC MVC 24, low. I am taking a prescription for Phentermine for weight loss online and it has helped tremendously with fatigue. I’m sure this is not okay to do, but it’s the only thing in years that has touched the fatigue. Can you get a stimulant prescribed for your fatigue? I’ve heard mixed comments. I feel like a drugged asking. But they just always say drink water and wait for your labs.

Thank you all and gosh bless, and stay strong!

Nicole & fam

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Hi Nicole,
I thought I'd post a link to your previous discussion for people who may wish to get more background and where you got some help from @trillium and @becsbuddy.
– Polycythemia Vera: Is there anything I can do for fatigue at home? https://connect.mayoclinic.org/discussion/fatigue-2/

Here's an article from Mayo Clinic about phentermine
– Is phentermine a good option for weight loss? https://www.mayoclinic.org/healthy-lifestyle/weight-loss/expert-answers/phentermine/faq-20057940

Are you taking phenermine for weight loss or specifically to help the fatigue? Or is losing weight helping the fatigue?

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@colleenyoung i will go back to my original post and check these out first- thank you for your original responses and others’ input! I am still new to using this forum and learning how to navigate. Thank you so much!

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@nicolekapr

@colleenyoung i will go back to my original post and check these out first- thank you for your original responses and others’ input! I am still new to using this forum and learning how to navigate. Thank you so much!

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No problem, Nicole. I've moved both your messages into this one discussion so you can find everything in one place.

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@nicolekapr

Hi there/ this is my second time posting for fatigue with a more clear idea of what’s going on. Admins, if you could direct me to where we tell our crazy medical stories I will share now! 🙂 waiting for BMB DX but looking like familial polycythemia. I have a Vera DX but got a second opinion. (It’s an odd case, new mutation). They are not committing yet. Will probably transfer to Mayo for the “more rare causes- the familial” or a thalassemia. Labs are all conflicting. One says yes, or no, BUT etc

After the birth of my daughter I got even worse, and that’s when they discovered the PV and RA, labs etc.

My question: is anyone getting prescribed a stimulant for their condition? One of my doctors said I’m not “anemic enough” for a transfusion, (red high, platelet stable, but the cells are very small. MCS MCHC MVC 24, low. I am taking a prescription for Phentermine for weight loss online and it has helped tremendously with fatigue. I’m sure this is not okay to do, but it’s the only thing in years that has touched the fatigue. Can you get a stimulant prescribed for your fatigue? I’ve heard mixed comments. I feel like a drugged asking. But they just always say drink water and wait for your labs.

Thank you all and gosh bless, and stay strong!

Nicole & fam

Jump to this post

Hello
I’m also taking phentermine to help with weight loss and it does seem to help tremendously with my fatigue too. I’m optimistic that weight loss and be more fit will help with my fatigue long term. If not I will be asking my doctors if continuing on phentermine maybe at lower dosage would be an option.

I was prescribed methylphenidate for fatigue which helped some, I didn’t like the heart palpitations I had while taking it. I had issues with palpitations early on with my Sprycel treatment also. Maybe this would be an option that would work for you.

Stay strong!

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